Waiting to Exhale

Since Mr. B was diagnosed with MM just over a year ago, I have felt like I’ve been holding my breath. And at times, I have felt like I’m drowning. I have paddled upstream for much of the journey. I have navigated uncharted waters. I have learned to make my voice heard and I have learned to be the voice for Mr. B. But mostly, I’ve felt so totally alone that the weight was almost unbearable at times. Only those that have walked this path can understand what I mean. It is a walk that I would never have chosen for myself or for Mr. B. Nor would I wish it on anyone else.

Yesterday we had our first visit from the palliative care nurse. She spent two hours with us. During that time, she took a complete history of what Mr. B had been through. She wrote down all of his medications, all of his doctors’ names and the phone numbers of his nurses. She also recorded any appointments or tests that were scheduled. She said that she would be the liason from now on with all of his doctors. I felt like a huge weight had been lifted from my shoulders and I could finally take a big breath. All that I have asked for continually during this nightmare is that there would be some communication between all of the doctors. They all seemed to be worried about their area: cancer, kidneys, pain but no one seemed to look at Mr. B as a whole person and how he was progressing. Now at least I felt like I had someone in my corner. Even though Mr. B is not officially on the palliative care program, they did say it was ok for him to see the palliative care nurse. I was very thankful for that. I believe that this is just the first step before Mr. B enters that program and I think his pain doctor recognized that this was the way things were going when we saw him on March 14.

Today we had an appointment with Mr. B’s cancer doctor. Since Mr. B has refused dialysis for his kidneys, the doctor cannot recommend continuing with the chemo treatments. He said that it would be counterproductive because the kidneys would continue to fail. Right now the treatment he is on (Revlimid & Dex) is not working to bring down his Lamda Free Light Chains and this is causing his kidneys to fail. If he does take the dialysis, the cancer doctor could try only one more option and that is a stronger dose of a drug that Mr. B had been on previously but had made him very sick (Cyclophosphamide). I fear that it would kill him anyway. So the doctor left Mr. B to make a decision about what he wants to do. At this point he is standing firm that he does not want dialysis. I said I would support him in whatever decision he made. We both cried in the office and when we got home. I know that Mr. B will have to make the decision soon and at that time he would be eligible for the palliative care program if he declines all treatment. I cannot begin to understand what he is experiencing right now. It is not an easy decision to make but the truth is that his body is growing weaker each day and it could be possible that the decision will be taken out of his hands. :-(

And yet, through all of this hell there are moments that bless me beyond words. A few days ago a dear friend sent me a text.  She said to me, “Hey we are going out for an after supper treat to Dairy Queen. Can we bring anything back for you guys?” I was sure Mr. B would refuse since he wasn’t feeling that great but he surprised me and asked for a strawberry sundae. I passed on the message to my friend. As soon as I hit “send”, Mr. B asked what I was getting and I answered that I was getting a blizzard. So he said that he would like one of them instead. His mind is a bit indecisive right now. LOL  I quickly texted my friend back to make the correction. A little while later she arrived with our treats. It was so neat to see him enjoy his mini blizzard…just the right size for him. And it also brought me to tears that such a small gesture could bless me so much. I wondered if this would be the last time that Mr. B would experience a blizzard ice cream treat. Thank you, Nicky. I will never forget that small act of kindness.